Tuesday, February 28, 2017

Man On The Wire

Of late I find myself in uncharted waters, my creeping paralysis taking me to places in mind and body that I could never have imagined I’d visit. It’s simply getting harder and harder to do everything, and as a result my contacts with the world outside of my apartment grow fewer and farther between. As my disabilities progress and my abilities regress, the familiar patterns and rhythms of everyday life fall further and further away, my healthy days now so for behind me that the memories of them often seem false, the stuff of imagination. Strangely enough, even as my old reality seems to vanish into the ether, certain incidents and instances do suddenly pop into mind with crystal clarity, richly detailed and full of life, decades old events recalled as if I’d lived them only yesterday. This juxtaposition of the old and the new, cast in such stark relief, reveals just how obsolete the rules that governed my old life have become in the context of my new reality.

As my existence has shifted more and more from the physical to the mental, certain truths about myself and my fellow inhabitants of this planet have become clear. Almost from birth we are taught the constructs and customs of the societies in which we live. Now more than ever the mass media plays a tremendous role in shaping our ideals and expectations, and in defining the parameters of social interaction. Along with reading, writing, and arithmetic our 12+ years of formal schooling provide us with a variety of behavioral templates for daily life. In combination, these ever-immersive entities imprint within us a library of scripts that cover almost every situation we might encounter, almost every part life might call on us to play.

We are taught that our destinies are largely a function of free will; in reality, though, most people live lives that fit neatly within the confines of predefined boundaries, which fall into a daily routine permeated with sameness. We each flesh out our roles with our own particular quirks and peculiarities, but rare is the person who shatters the restraints and expectations of social norms. Some of the people that do so with audacity become rich and famous as a result, but many others who can't or won't comply struggle through life on the fringes of society. Woody Allen famously said that 80% of success is just showing up; this is largely true due to the fact that most human beings can fake it till they make it, falling back on sets of learned behaviors until they can grow into the roles they are expected to play.

Our DNA provides us with the basic programming that defines our individuality – our operating system, if you will – but the process of socialization we undergo as we mature applies layers of scripts and apps that inform the way we function in a diverse array of situations. Just as lines of code allow our computers or cell phones to become spreadsheets or image editors, the scripts and apps we learn through years of schooling and constant exposure to mass media allow us to navigate life playing a variety of parts, some much more suited to our basic needs and wants than others.

Looking back on my own life I can clearly discern when certain sets of scripted behaviors kicked into gear. In my childhood I was a dreamer, very intuitive, sensitive and emotional, at times to the point of being overwhelmed during what in retrospect was very disjointed upbringing. As an older teenager and young adult in New York and Boston I fancied myself a creative rebel, eagerly immersed in a punk rock subculture filled with other nonconformists who somehow looked almost precisely the same as me. I felt comfortable within the confines of this group dynamic, it’s brand of nonconformity easy for me to adopt, and the lifestyle it afforded fit my natural tendencies towards a nocturnal existence and a general aversion to all things 9-to-5. Though many of the aspects of this role meshed well with my core predispositions, I still never found any long-lasting satisfaction in this guise, my high strung nature always finding reasons to be unhappy.

As I grew older, a series of unpredictable events found me living in a place (South Florida) and assuming roles (corporate cog) that ran absolutely counter to any path I had previously envisioned for myself, and in fact had sworn I would never travel. Still, for a time I survived and sometimes even thrived, falling back on a library of skill sets and behaviors I’d assimilated despite myself. Regardless of the pretzel like contortions required of my natural predilections to adapt to such circumstances, adapt I did, to a degree that I sometimes still find implausible. Over time, and to varying degrees, I was aware that I was living the life of an imposter, and I attribute the perpetual stress of living such a life as being at least partially responsible for my eventually falling ill. Engaging learned scripts can allow one to exist in uncomfortable circumstances, but there is a gaping divide between existing and living.

After far too long I wised up and hightailed it back to New York, whose familiar embrace felt as comfortable as slipping into a favorite old pair of jeans, and skill sets much more familiar than those used in Florida were easily reengaged. For several years I flourished,finding a high profile job in a "glamour" industry and marrying a woman too wonderful for words, until one day during a miles long stroll through the city with my furry best friend Stella I suddenly noticed I was limping. A few months later I was diagnosed with multiple sclerosis, likely the progressive kind, and my existence shot off on another unexpected tangent. About three and half years after I was diagnosed I was forced at age 43 to “retire”, and a year and a half after that a wheelchair became a permanent part of my life.

For many people, leaving work and going on disability can lead to an existential crisis, their divorce from the workforce shattering their very sense of self. This is especially true of folks in the professions, many of whose identities are tied closely to their life’s work. I had no such problem, as even though I attained a respectable amount of success in a highly competitive field, I never fully identified with what I did for a living. I liked saying I was the Director of DVD Production for a huge multinational entertainment company much more than I enjoyed the day to day routine of doing the job. In fact, after a short period of adjustment, I found retirement exhilaratingly liberating, particularly so after I got the wheelchair (which I most assuredly did NOT welcome with open arms) and could scoot around the city and explore all of the nooks and crannies of Central Park to my heart’s content.

I found that even though my circumstances were unfortunate, I no longer needed to fire up any script or program other than those which suited my core desires, many of which had been subjugated for years by the expectations and responsibilities of adulthood. With a camera attached to my wheelchair I started shooting photos and videos, expressing creative impulses that dated way back to my childhood. And then this blog was born, and people I didn’t even know started responding to the words I put to the page. I even discovered a hidden talent for understanding complex medical gobbledygook and translating it into understandable English. In a bizarre turn of fate the fact of my getting sick and its subsequent consequences wound up fulfilling many of the dreams I’d had as a youngster. Yes, certainly a case of be careful what you wish for, but any dream realized, no matter the price, is a precious and wonderful thing.

Now, though, as the disease continues to chop away at my abilities, slowly turning my appendages into useless clumps of tissue – at times robbing me of the dexterity to manipulate a fork much less a camera – and my illness steals from me of the energy to do much of anything at all, I find that I have no script to fall back on. The combined forces of the mass media and years of schooling somehow left out any instructions on how to deal with a decade and a half of creeping paralysis, with its encroaching decrepitude that strips away every sense of normalcy, batters the body and soul with an ever-mounting pile of indignities, and leaves one forced to watch themselves slowly wither away. What cues am I to take, what lines am I to speak, what thoughts am I to think?

So now I enter a realm of improvisation, an ad-libbed world to be negotiated with no map, no signposts, no headlights to help navigate the blind curves ahead, with only my wits and whatever wisdom I’ve accrued to help me feel my way forward. Friends and loved ones are of tremendous comfort, keeping me tethered to the world of the healthy, and my fellow members of this club that no one would ever wish to join can empathize with my tribulations, but this is a journey that ultimately leaves one traveling solo. I suppose the bigger truth is that everyone, sick and healthy alike, ultimately winds up alone. I’ve never heard of a casket built for two.

Not that I am abandoning hope, as for reasons I can’t quite figure this illness has yet to pry optimism from my grip, and I’ve certainly no plans to go quietly into the night, though I’ve also no plans to allow this disease to turn me into a brain trapped within a useless prison of flesh and bone. No, I’ll continue to castigate the powers that be who seem ever more inclined to put profit before patients, I’ll put a spotlight on reasons for hope, and I’ll comment on the human condition from the peculiar vantage point afforded by a life lived in the company of heinous, unrelenting illness. I’ll do so, though, feeling like a man on a wire with no net beneath him, winds gusting furiously beyond anything his training and experience has prepared him to defy. With no script to follow, no application to engage, I suppose there’s nothing left to do than to just make it up as I go along, and to understand that if I fall from the wire, the very act of falling itself may be filled with its own kind of wonder.

27 comments:

A tear is welling in my eye. I have rrms and very limited disability. But I ve had a small taste of this nightmare. Your story, for all its ugliness is really beautiful. It makes me really appreciate what I have and enthusies me to take up arms with you. Thank you for sharing.

Marc this torturous disease we share robs us of many many aspects of the old person I personally took for granted. You're absolutely correct in pointing that out. I often miss the old me, but am trying hard to find solace, and even a sense of comfort in the ever changing new me.

As the fourth anniversary of George's death approaches, I still find myself trying to negociate the conundrum of his determination to die as oppossed to living with MS, in a body that no longer functioned.I think that I will take this question unanswered, to my last days. While you represent the opposite of George's choice, it does no less negate his rightness in choosing not to remain. I honor your words and hope, as I honored his determination and resolve. Peace, to you Marc, and to all who struggle and suffer.Love you always,Hilda

Hilda, my thoughts are very much been with you and George the last few days. I find some solace in knowing that no matter where he is, The Greek is now at peace. And I hope that you can find some measure of comfort, somehow, someway…

Marc,Thanks for putting into words something many of us are experiencing. We are like travelers to new hostile worlds and we do survive despite the harsh environment. I hope to continue on and taking each challenge and 'working around' the issue.I'm / we re all quite fortunate to have such a eloquent / intelligent spokesperson to put into words what many of us experience.Please press forward my friend.

The intellectual life has its rewards, as you have so well demonstrated. It is something to look forward to, even for those of us who had never contemplated it. Though I was raised by a couple of intellectals, I hadn't thought about this in a long, long time. Thank you.

Mark, you have a way of being able to define this darkness or maybe it's sadness that most of us feel but will not allow ourselves to verbalize. Thank you for sharing your inner most thoughts and for giving us hope. Now, if I start feeling that I am on that wire by myself...I will remind myself that each and everyone of us is desperately trying not to fall off and that maybe with each other's support, we can get to the end. You are a blessing!

David, thanks for reminding me to mention my wonderful wife. In earlier drafts of this essay I did put the spotlight on her, but somehow this got lost in the editing process. I've partially rectified that now with the addition of a few words, although admittedly it's too little, too late.

Sounds like we do have much in common. Shoot me an email using the "gadget" on the left.

Oh, and "L" might be even more astonished to learn that we are made of Stardust, all of our atoms having been birthed in the Big Bang. We are all, literally, one with the universe…

Mark, Your writing is always eloquent. Your essays, including this one, are inspiring. I am in awe how you address your personal journey with MS. Your attitude and spirit are something that I wish to emulate in my journey with MS. With much gratitude.

As always, thanks for sharing Marc. We all love you and appreciate your unique way of putting things out there. Whether it's an amazing introspection into the BS that this disease brings or a honest and thorough analysis of new therapies, your blog continues to be one of the best there is - period.

Marc,Your writing here has left me groping for words in attempting to thank you for your time sharing your experiences. Trying to find words but being absolutely bereft of them was something that had never happened before the MonSter climbed on my back -- this is how I deal with my own progressive case of MS, as humor is part of my coping mechanism. Still and all, thank you for sharing your writing about your experiences. Trying to not give up and go quietly into the night myself,Gale.

I have quietly followed your wonderfully written post for the last three years. My path has been much like yours, including a stint in Florida, that did nothing more than take some time out of my life, and give me additional headaches that I didn't need.

This disease is relentless with it's python-like construction on each of us. But please know this: your writing, your humor, your insight your rants, all of it helps make the journey easier. Thank you for all that you have done, all that you have given, to each of us. God bless you brother.

While it is tremendously gratifying to get so much positive reinforcement, my heart breaks to know that so many can empathize and identify with my words.

This disease robs so much from its victims, but it cannot take away our humanity without our permission. And none of us, not a single one, should ever, ever grant that permission. We can accept our fates, but that does not mean capitulating to them. Only those bearing the burden of this illness can ever really know just how much strength it takes to get through each day, each hour, each minute, each moment. We may all handle our situations in different ways, but the resilience and fortitude shown by all of my fellow MSers never fails to humble me.

So I return all of the gratitude sent my way, as your words help bolster me and act as rays of light to brighten my path. Though I am good with words, I have none to express the full measure of my appreciation for all who read my essays and participate in this blog.

Marc, you do more good than you may know and you are inspirational. As the spouse and caregiver of someone suffering with MS, one of my jobs is to keep her motivated and believing that help is on the way and that a lot of smart people (including Dr Sadiq) are working on finding a cure for this disease. When she tells me that she is ready to go when God wants her, I tell her to hang in there a little longer.

Hi Marc your latest post really pushed some buttons for me and I went away and thought about how things have changed for me over the last few years. I think the biggest impact for me was no longer being "fit for purpose" to work for my living. While there was trauma related to financial security it also gave me a lot of free time to examine my life to date. Out of that introspection comes a greater level of self awareness. And with that came some real positives for me and I now lead a more creative life painting, print making and finally learning to play guitar. If you look hard enough there seems to always be a silver lining. In your case I find your gift for writing so inspirational that whenever the black dog lurks in my mind I will check your blog and always find some little gem to take away. I don't know how I can repay your generous spirit.Best Regards Nick

I was officially diagnosed with progressive MS about a week ago, after a lumbar puncture. I can't begin to tell you how much this blog post moved my soul. You are an artist with words, Marc, and I thank you for it. Looks like I am beginning this journey alongside friends I have not, as yet, met.

The sheer Joy that has welled up in my heart since I realized what was probably wrong is something that has completely knocked me sideways. Not what I was expecting at all. However long I have left, I will treasure, as I will treasure those I love.

One Mser to another...Hang in there. How dumb of an expression is that anyhow? Hang in there...What you say when you don't know what to say but you want to give a sincere pat on the back.

I know all too well the isolation and the divorce from the job. The sense of navigating this "new me". There are bright spots. I play piano now in my 40s though never touched one before my disability and "retirement". I play by ear because my cognitive issues. My brain won't retain what I study. But that is amazing in and of itself. I hear music. Beautiful music. Either old hymns I heard as a little kid or new uncharted songs. Another bright spot...Much more involved with my kids than before. Have a one year old I now see and enjoy daily. When I worked all the time I missed a lot. And in the still of the night I have conversations with Jesus. Never did that before. Nor wanted to. But I know what you mean in your painful but hopefully writing. Uncharted waters and nothing to use as a guide, and yes a solo journey. I used to be angry feeling abaondoned by former friends and coworkers but have made peace with that. I no longer live for the opinions of others and that in and of itself is liberating. Hey Marc, bless you man

That was so well written. I have a friend in early 50s just been diagnosed (the live of my life actually) he has very young children. So sad to hear the news as he was very much like you. Loved punk music didn't do 9 to 5 etc. I'm so glad I found yr site on here. I'll keep reading. Yr words are inspirational. Take care.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...